Mam's glioblastomas

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Good afternoon, 

My mam oxygen levels are now fluxuating, they are reducing her oxygen that's she on! As the tumour is progressing. She's so emotional, crying all the time, she's got no quality of life, they get her up in a wheelchair, 5 minutes she wants to be back in bed. She's very close to a couple of carers who are now off till next. My mams friend called when I was there, literally wasn't interested in her didn't even look at her, she dropped some pop off and left. I felt bad but I can't do anything. My mams on the highest dose of everything. When do they start reducing steroids or will she be on them until the end! It's a hard one, she was saying to me I can't fight this anymore! Is it now let nature takes it course. That's the impression I'm getting! 

Thank you for my rant 

Xxxxx

  • Oh, Magpie, no need to apologise for ranting. We're all here to listen and support you as best we can. 

    This journey is beyond tough. It's cruel and its heartbreaking to watch.

    I'm not medically trained but I would suggest that you have a frank conversation with the palliative nurse and Dr about what they think the next few days/weeks are going to bring. Ask them to be 100% open and honest with you. Ask them what they would do if your mam was their mother.

    I had that conversation or variants of it several times in the last couple of weeks of G's journey.  He had been on a very high dose of steroids that triggered steroid induced diabetes so the dose was wound back. He levelled out on 4mg of dex a day but about 10 days before he died we could see he was failing and I had that frank conversation with the hospice nurse and with the doctor's approval they agreed to stop the steroids. Did that medication tweak hasten the speed of the journey?....we'll never know. 

    Trust your gut instincts here. Afterall you know your mam best and know what she would want to happen.

    Sending you strength, love and light and hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks so much, they didn't even ring me the home and say they were going to stop the oxygen either, the other thing my mam wanted her hair brushes she started getting angry so she used the TV remote even tho my mams hair is so short you don't need to brush it, I just said to my mam right I'll go make you a coffee as she was getting very angry. She was ok when I got back. I'll ring palliative nurse in the morning and have a good chat with her thank you 

    Xxxxx

  • So if you don't ask you don't get kind of thing, do they have to stop steroids or not? Do they have them until the end? I'll have a work with her tomorrow, not that she'll give a lot away. I can always ask the questions, since the doctor says she was ok, that's basically it, she's ok we'll leave. She has a sedative on a night time but sometimes she won't take, they can't force her to take it! Xxxxx

  • Hi wee me, 

    Looks like the pain setting in now, you can see it in her face, I did tell the nurse today, I'll speak to palliative nurse tomorrow and tell her, I know my mam the look she was giving me was like I know I'm dying without saying it poor soul. 

    Xxxx

  • One day at a time, Magpie. The nurses will keep her as comfortable as possible.

    Sending love and light and hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi wee me, 

    My mams deteriorating now, her urine is dark colour like dark red, her kidneys are failing, she's not hungry no more and starting to sleep more, that was today. Poor soul I think the end in near, I'm terrified now scared. I hope she goes in her sleep 

    Xxxxx

  • It's only natural to be scared at this stage. I totally understand where you're coming from. I felt the same about G. 

    He lasted 6 days without food or water... just to give you a basic timeline. Everyone is different though. He was unconscious for most of that and the hospice nurses kept him comfortable. In the end it was very peaceful.

    Stay strong. You're doing an amazing job at supporting your mam and I'm sure she's thankful that you are there for her.

    sending you a huge virtual hug and lots of strength.

    love n hugs

    Wee Me  xxx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Yes thank you, I know it's very hard now as the end is coming, so sad. Ive come this far, I've got to carry on it's awful tho. I can't thank you enough for all the support you have giving me through this journey 

    Xxxxx

  • No need to thank me, but I appreciate it. 

    I've always said if I can help someone through this journey I will as I understand only too well how tough it is. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm